The Waiting Game...Again

So here we are again...waiting.  We are six months post-diagnosis and should currently be eligible for insulin pump therapy which is exciting and we've been waiting for this time but we are currently

WAITING

Our Children's Hospital was wonderful while we were getting our initial diagnosis about providing us information and training and they have been available as we've progressed in our journey and we've made it clear from the beginning that we are interested in insulin pump therapy as we know it will better keep our son in a healthy range.  At our 3 month appointment, held via phone call, we told our endocrinologist that we wanted insulin pump therapy and wanted to do anything we could to be ready when he reached 6 months which is when our insurance company will cover the insulin pump.  At that time we were told they weren't holding classes but maybe they would have them virtually over the summer. Due to the pandemic we haven't been able to attend any training on insulin pump therapy but we aren't too concerned about our ability to learn what we need in a distance model.  

We have done our own reading and research and yes, we've watched youtube videos and read blogs of others with type 1 diabetes.  We talked to friends who have insulin pump therapy as part of their lives. We  narrowed our scope to two devices, got a trial of each device and ultimately chose the one we felt would be the best "first" insulin pump for our son.  We have been keeping in contact with the insulin pump representative in our area and were made aware that our insurance wasn't covering the existing PDM for the pump until their next update and we've been told that the update occurred and insurance will start allowing coverage of new prescriptions for this insulin pump this week.  Fingers crossed but I'm only hopeful, not really optimistic.  I am pleased because this means we will likely get this done before fall but I'm not holding out hope that we'll have the insulin pump easily or quickly.  It took a lot of calling and sorting to get the approval on our CGM so I'm guessing this will be the same rigmarole.  I'm ready and willing to spend hours on the phone and feel that frustration but I wouldn't mind being spared the experience so fingers crossed.

Unexpected Good

My friend at work has a daughter with diabetes.  She was diagnosed a year and half before my son at about the same age he is now.  I wish my friend didn't have to be a T1D Mom and I wish her daughter didn't have T1D just like I wish my son and I weren't doing this.  But...

I try to find the good.  I try to celebrate small successes and appreciate what I have.  Where I live, how I've lived and live, the fortunate life I have, my family, my house, the comforts I have.  I try to find the good.  I think most people do.  I think we humans may be predisposed to both complain and make the most of.

I was reading other blogs and looking at recipes and finding resources when I came across a survey question.  I wish I could figure out where it was and direct others there but no matter.  The question was something to the effect of: since you now have a child with type 1 diabetes, have you found any unexpected good/positive?

YES, YES, YES

If you choose to look for the good you will find it.  Maybe you won't find it in every moment and maybe there will be vast amounts of time when it is too difficult to look for the good but ultimately I think it is there.

Unexpected good:

1. There are more kisses, hugs, and cuddles with my ten year old now.  He and I talked about this because he had almost "outgrown" most physical affection (yuck mom) but now that he has diabetes he feels like it is okay for him to accept and enjoy extra "love".  He said "other kids won't think its weird because I have to have shots and they will think I need hugs for that."  :)

2. We are appreciative of our family time and the simple acts of being a family.  This is probably related to the hospital visit and fear and will fade again over time but right now we are all feeling the joy of family (even my teenager).

3. I'm a terrible cook but my kids are trying to tell me something I did right at each meal.  I suspect hubby had a chat with them about it but I don't care, I'm happy to have any positive feedback.

4. I have given myself permission to leave more of my work at work and to focus my home time on being home.  I'm a teacher so bringing work home is pretty common but I am taking less home time for work right now and focusing more of my attention on being in the moments of each day including focusing on home while I am at home.

5.  When we opened up to friends and family about our son's new diagnosis we found out that we have lots of friends with type 1 diabetes.  Apparently it isn't something you brag about or talk much about unless you find out someone else can truly understand and then you are immediately bonded in a new way.

I'm hoping to come back to this post over time and add to this list but hubby asked if I would watch TV with him and so here I go to focus my time and attention on the family that wants to spend time with me right now.  Good.

The 3 a.m. Club!

Yes, I admit it.  I'm a member of a club.  The 3 a.m. club!  We have the best parties...just kidding.  I am one of so many family members and caregivers who wake up in the middle of the night to check the blood sugar level of a (hopefully sleeping) diabetic relative.

This isn't a club I purposely joined or ever really wanted to be a part of and yet there I am in the wee hours of the morning padding softly down the hallway trying not to wake anyone (especially not the dog who sometimes decides he needs to be let out to sniff around the yard for half an hour).

I sneak quietly into my son's room and attempt to poke him with a lancet and draw blood without waking him.  I'm pretty good at it now too.  He almost never wakes up.  Or at least he pretends he doesn't wake up.  His numbers at 3 a.m. have been right on target for almost three weeks now and hopefully I don't jinx it with this post.

Some people stay members of this club for years.  Some are told that they can take a break from membership but can't bring themselves to do it.  Others do take a hiatus but that is usually all it is.  If you are helping manage someone's type 1 diabetes you will be awake in the middle of the night at some point for blood sugar checking/management.

I'm currently in the club under a physician's direction.  If/when I am told I can take a break I'm not sure what I will do.  I know some parents that take the break and just feel thankful to be sleeping through the night.  I know other parents who are given the option of a break but can't sleep without checking.  I've recently been talking with a friend who is in the club for herself and despite having a continuous glucose monitor with alarms and a couple of friends that also receive alarms for her, she still wakes up between 2 and 3 a.m. every night because she is just so accustomed to needing to that she can't help it.

When I first joined this club right after my son's diagnosis, it was very stressful.  I didn't know what I was doing, I didn't feel confident in my responses to his numbers, and I was often awake for long periods of the night.  I would wake frequently and check the clock over and over again fearful that I would miss the alarm.  After checking I would have a lot of trouble falling back to sleep with my mind racing.  I've settled into it some now.  I trust the alarm will wake me so I don't check the clock even when I wake in the middle of the night.  After a check I can usually fall back asleep within an hour...sometimes I have to just count my breath 1 in 2 out over and over again to quiet the mind but most of the time I'm asleep again within the hour.  This isn't a club I really want to be part of but I'm thankful too because a lot of families have joined other clubs that don't have as positive outcomes as my club.  My son will likely have a long and full life and the price for that is waking in the middle of the night - WORTH IT!

Hurry Up & Wait

It's been about six weeks since N was diagnosed with type 1 diabetes.  It is definitely a learning curve and making the proper adjustments takes time.  There is definitely a pattern I'm noticing though where we hurry a bunch and then have a long period of waiting.  HURRY UP...WAIT.

When he was in the Children's Hospital we were in the Hurry Up phase.  Hurry up and learn all the things so you can go home and be the best artificial pancreas you can be.  Hurry, hurry, hurry, learn, learn, learn.  Then we got home and it was WAIT WAIT WAIT.  Wait for 3 hours, check a glucose level, freak out (not everyone does this step), call the number, WAIT for someone to call you back.  Then HURRY UP and do the thing because you should have done it twenty minutes ago before you called.

Or WAIT, WAIT, WAIT three hours then check a level.  HURRY UP dinner needs to be done and on the table in fifteen minutes because we've already given the insulin and what do you mean we're out of grapes that is what we factored for fruit!

Or it is HURRY UP and send in your numbers to the team because they need to be in before 11 a.m. then WAIT for a response because you're sure something will be changed and yes it is changed, they want you to use a different ratio for lunch but lunch was twenty minutes ago.  Don't misunderstand, I LOVE the TEAM!  I don't know how long things have been this way but sending our numbers in and getting recommendations from our medical professionals is a gift and a blessing.  I don't know how they are making their adjustments to ratios and factors but however they are figuring those things out we are reaping all the benefit.  We are almost always within our target range and I have not made any decisions on my own about ratios and correction factors and how much long acting insulin my son needs.  This is a delicate thing and I am so thankful for the team who is keeping us at the right levels for my son to live his best life.  I'm just noticing that it is also part of the HURRY UP then WAIT pattern which may have a lot to do with my mental processing of this new situation; it may be my overwhelming desire to be in control.😉

We feel like we did a lot of WAIT in regards to a potential Continuous Glucose Monitor (CGM).  This device is worn for several days and sends glucose numbers to your device or iphone.  Depending on the device that is chosen you can have updated numbers every few minutes, use a program to track patterns, have the numbers sent to multiple devices.  These things are great and exciting and we knew we wanted one.  My T1D mom friend got one for her daughter and it was a game changer for how they were managing and how comfortable she was as a parent.  She could check numbers while her daughter was at a friends house or at school.  She could see patterns and make smart adjustments as she got more familiar.  She started to extend the time from when she gave insulin to when she gave food so that the two peaks would match up better keeping her daughter in range better.  We knew we wanted a CGM but WAIT WAIT WAIT our insurance doesn't cover these until 30 days after a diagnosis if you take good data in your book.  We took data (and would continue to do so even with the monitor) and we waited until we got to 30 days & we reached out to get the device.  HURRY UP they need a copy of this and a prescription from that.  So we hurried and got the right person with the right thing then WAIT again because from the time you ask for the device it can take 4-6 weeks to get all the right signatures and permissions and for the company to get the order and for the device to come to you.  No tracking number...we just have to WAIT. (but it is coming straight to our door so one day we'll come home to a nice surprise and then we'll be in the HURRY UP mode for a few hours probably).

I expect we'll find ourselves in a similar situation in a few months when we are ready for an insulin pump.  Right now we are in the WAIT period for that.  Our insurance requires that N have his diagnosis for six months before he can be considered for the insulin pump.  I get it.  We need to learn things the "old fashioned way".  Actually the way we are managing diabetes is relatively new.  Compared to even 20 years ago things are new.  Treating diabetes with insulin is new in the last hundred years and in the scheme of things that's not very long in medicine.  It's long for a human though.  We are learning to finger poke and check glucose, we are learning to look at that data for patterns and to make adjustments to keep those numbers in our target range, we are learning to dial up our insulin and give the injection, we are learning how N responds to all of these things.  We will need to be able to do these things proficiently even after we have a CGM and an insulin pump (if we get approved for those).  Technology doesn't always work, things break or accidentally get taken in a swimming pool or any number of scenarios and you have to use the "old fashioned way".  I'll be glad that we are proficient at the old fashioned way when we need it but I'll be glad to have the new innovative technology too.  I understand we have to WAIT and HURRY UP and WAIT some more.  There is a difference between understanding and being at peace with your knowledge though.  I'm anxious to keep making the best decisions for our son and it may not be as dire as we perceive it to be but we want to ensure our choices are giving him all the opportunities in life.  Good diabetes management is what we can aim for and advancing technology can help considerably.

It isn't easy to wait and in our age of instant gratification it is reminding us that we have patience and that things happen in their own way and their own time.  It isn't easy to hurry when you are tired and worn down and there are no vacations from diabetes management.  You can't just take a day off or sleep in on Sunday morning.  We're doing okay with it all.  N is thriving right now especially when we look back with our new 20/20 hindsight at how he was feeling in the weeks and month before his diagnosis.  HURRY UP...WAIT  of course we will continue to do both to the best of our ability for as long as it needs doing.  Thankfully we have a great team and strong supports and loving friends and family.

From Emergency to Children's Hospital

We got N's diagnosis on a Sunday morning at about 1 a.m. in our local emergency room.  Things moved pretty quickly from there.  Our hospital often transports pediatric patients to a larger city Children's Hospital about two hours away.  The emergency room doctor gave me the diagnosis and told me what they were doing to treat my son who was in diabetic ketoacidosis (DKA).  DKA is a life-threatening problem that occurs when the body starts breaking down fat too quickly because the insulin isn't there or isn't doing it's job; the liver responds by turning the fat into ketones which causes the blood to become acidic.  The breathing my son was doing was his body's attempt to bring down his acidity.  They were treating him with IV fluids and insulin and were already coordinating with the Children's Hospital to transfer him.  Our ER doctor warned me that he would go to the Intensive Care Unit (ICU) at first because of the DKA.  The weather that night was super windy and rainy and they were concerned the ambulance would take too long and possibly get stuck in traffic so a helicopter was coming to pick him up.

Things settled down in the room we were in and I had a chance to give my son a hug and stroke his hair.  My ten-year-old doesn't usually like these displays of affection in public but he didn't seem to mind that night.  I told him we knew what was wrong and we were going to be able to get him feeling better over the next couple of days and that he was in good hands and could sleep if he wanted.  He was out a few minutes later.  A nurse hugged me and told me she was sorry all this was happening and that my son has diabetes but I just told her thank you because I knew the problem and I knew we could work with it.  We can't cure type 1 diabetes (yet) but I'd had a friend with type 1 in my twenties and his life had seemed to be going pretty well so I knew we could work it out.

So, the helicopter is small and is set up as a self-contained emergency room.  When the crew arrived to pick my son up they wanted to weigh me to see if I could go with him.  I needed to be under 150lbs...I didn't bother to get on the scale but I did chuckle and thank them for their grace.  N went in the helicopter and my husband and I drove the two hours to the new hospital.  My sister, who had taken us to the ER, went back to my house to break the news to my sixteen-year-old when he woke for school.

When we got to N's new hospital room (ICU) he had just barely arrived and they still had the gurney next to his bed.  There were so many people in there that we weren't sure who to talk to.  My sister is a nurse, my mother is a nurse, and several others in my extended family are nurses so I always look to them.  Our ICU nurse was wonderful.  She made sure I knew what was happening at every step and my training to be a type 1 diabetes mom started the moment I arrived in that room.  She told me everything she was doing and why she was doing it and under what circumstances I would be doing it too.  I didn't sleep much in the 3 days we were in the hospital but I learned a lot.  We were at Children's Hospital Monday morning (3 a.m.) and we went home Wednesday afternoon (1 pm).  In that time we met with an endocrinologist, a dietitian, a nutritionist, a counselor, and someone (I don't know what his title was) who explained all our supplies to us.  We learned about counting carbs, calculating insulin to cover, how to correct for lows and highs, sick day management, how to check blood glucose levels, and how to give insulin injections.  We gave our first insulin injections to our son under the supervision and coaching of the nursing staff.

The best part about being in the hospital was having experts around all the time helping us to learn our new skills.   We were anxious to get home though since our teenager was home alone, we were far from family and support systems, we weren't able to sleep very well, and my son was tired of eating his food cold.  We would order his meals then have to wait for them to arrive in his room before giving his insulin since sometimes the kitchen would get behind and ordered food could take up to an hour to arrive.  He'd then have to wait 15 minutes before he could eat.

We left the hospital on Wednesday afternoon with hundreds of dollars in diabetes supplies and our new worries and anxieties.  Thankfully I am a teacher and we were a little more than a week from our winter break so I made arrangements to take those days off to meet with my son's school and to get our house in order for our new life with a child with type 1 diabetes.

N was so happy to be home.  He was also uncertain about what his new diagnosis meant for him.  He needed encouragement to get back into his familiar routines and activities.  The first afternoon home he wasn't even sure if he could be in his bedroom by himself.  That night when I tucked him into bed I was so relieved; he was so much better than just a few days before.  The last time I had tucked him into his bed I'd been so worried and uncertain.  This time I was anxious for my new role as a T1D mom but happy to have him home and healthy.  A few hours later, as I did his 3 a.m. blood glucose check for the first time at our home I realized I'd left all our expert support behind at the hospital and I was now expected to know the answers.  Thankfully our team at Children's Hospital had given us the Pink Panther book and phone numbers to call and call we did.

Diagnosis Story

It started on a December Sunday when my 10-year-old son returned from a weekend visit with his dad.  He hadn't felt well over the weekend and had spent most of the time watching television from a couch.  Usually he and his dad spend time outdoors so this was unusual for him.  I kept an eye on him but he just seemed a little off so the next morning he went off to school.

Two hours into the school day and I get a call that N isn't feeling well.  No fever but complaining of stomach pain.  I pick him up ten minutes later and we take the rest of the day off.  No symptoms all day.  He seemed fine but just a bit tired.  I keep him home Tuesday just to be safe but again, no symptoms.  Wednesday he is back at school.

Right about lunchtime I get the call from the school again that N is in the office not feeling well.  He NEVER goes to the nurse so she is concerned.  We talked a bit about his lack of symptoms and fever but I decide to take him home.  The rest of the day he hangs on the couch watching television.  No fever, no stomach issues, just tired.  Thursday the vomiting began after eating and I though, "well, there's the flu".  I call the pediatrician and get the symptoms for this year's illness and sure enough it matches: tired for several days then vomiting some with fevers and some without.  I'm told to watch for dehydration and come in if he isn't better in a day or two.  Thursday and Friday he has times of tired and times of seeming like he is on the mend.  The vomiting was infrequent (3 times throughout the day) and we haven't seen it since Thursday so I figure we're on the right path.

Saturday night he comes to find me after his bedtime to say he can't sleep.  His breathing has changed to an audible breath and my level of unease goes shooting up.  I spend the night on the trundle bed in his room.

Sunday morning I call the pediatrician to come in but they can't see us until the afternoon.  I was so uneasy with the look of him, the sound of his breathing, and by this point he was having trouble with his balance when walking.  So we decide to take him into the urgent care clinic rather than wait for the appointment.  At urgent care they draw blood (no easy task because he is dehydrated) and check him over.  Their lab isn't open weekends so we are sent home with a prescription for some antibiotics for a possible sinus infection (because of the breathing which is now pretty forceful blowing out through his nose) and told to keep him on fluids like pedialyte or gatorade to rehydrate.  They say they'll call us if they find anything in the blood work but without a fever they are sure it isn't flu.  We cancel the pediatrician, pick up the meds and fluids, and spend the rest of the day pushing those fluids and some mild foods like toast and banana.

Sunday night I hunker down on the trundle bed again but I'm not sleeping at all listening to his breathing.  It is getting worse.  I've already decided by ten p.m. that we are going into the pediatrician in the morning.  N is sleeping fitfully and complaining that he can't sleep because his ribs hurt (probably from the forceful breathing).  In the middle of the night, I move him to the recliner in the living room to see if I can get him more comfortable.  As he tries to sleep I'm just watching him and feeling overwhelmed.  I finally called my sister who lives nearby; she's a labor and delivery nurse so I knew she wouldn't panic or overreact and I thought maybe she would come over and make me feel less worried.  She doesn't live far away so she showed up a little after midnight.  She took one look at N and said "get in the car, we're going to the emergency room".  She sped the whole way!

We pulled N from the car and went directly to the emergency room desk where I finally lost it.  Tears streaming down my face I said "my son can't breath and I don't know what to do". Those people in the emergency room...they are quick, efficient, and amazing. I am completely grateful for their quick and supportive care of my son.  Into a wheelchair he went, pulse oxygen monitor on his finger said he was getting plenty of oxygen and we're taken back to a triage room.  He's moved into a bed.  Many, many people were bustling around hooking up this and monitoring that but one nurse took a moment to let me know he was in good hands and they would work it out.  It was less than ten minutes from when we arrived in the ER to when the doctor came in to tell me "we know what's going on and this is going to work out fine...your son has type 1 diabetes."  then he smiled at me and said "I bet you didn't know that."   Well no, I didn't know that, but as soon as I heard it I felt relieved.  I know everyone who gets this diagnosis for their child feels differently but in that moment all I felt was grateful that we knew what was going on and that type 1 diabetes is completely treatable and people who have T1 can live long and happy lives.  Isn't that all we want for our children?